Pictured above is the AIDS Quilt Project, perhaps the most recognizable memorial for victims of HIV/AIDS. The quilt is a collection of hand-made fabric squares memorializing those lost to HIV/AIDS. The quilt includes celebrities such as Freddie Mercury and Michel Foucault, but more often than not the names were those of everyday people. For some, perhaps for most, this was the only memorial they received in life. This blog will discuss those who might not be named there. Those who may have never received a memorial at all. This is the story of one small town Arkansas woman who loved and cared for queer bodies dying from this disease in spite of the xenophobia that surrounded her.
As a child of the 1990s, I have distinct memories of the HIV/AIDS Crisis. I remember urban legends about AIDS-infected thumbtacks maliciously placed in movie theater seats. I remember it being called the “gay disease” many years after that particular mischaracterization was debunked. I remember talking to the older gay men in my small Arkansas town of Harrisburg (although there were only a few) about how they mourned the loss of loved ones the decade before. Little did I know, in our humble natural state was “the cemetery angel”. In Hot Springs, only a couple of hours southwest from me, was Ruth Coker Burks, dubbed “the cemetery angel” by her friends and the media after it went public that she served as not only caretaker for over a 1,000 families but also undertaker for dozens of HIV/AIDS victims. In all, Burks buried 43 bodies in Files Cemetery, her family’s cemetery that she inherited from her mother, a class privilege that allowed her, in some way, to do the work she did because ownership of a burial ground became critical to the work she performed.
For approximately a decade (between 1984 and the mid-1990s), Burks, with no medical training, cared for as many sick and dying queer bodies as she could when the HIV/AIDS crisis hit her home state of Arkansas. Burks’ work as a death doula began when she met Jimmy. Jimmy’s door was draped in fire-engine red plastic, alerting all that an HIV/AIDS patient was inside. And upon overhearing the nursing staff drawing straws in order to force one of them to do their job by providing him with care, Burks charged into Jimmy’s hospital room. Burks took command of the situation and cared for him until he drew his final breath begging for his mother who would not come to his side.
She even took over Jimmy’s burial needs, eventually having him cremated after a long process of denials from many Arkansas cemeteries. She used a “chipped cookie jar for an urn,” borrowed from a friend at a neighboring pottery shop and buried him in her family’s cemetery of which she still is the lone owner, Files Cemetery.1 This process continued for all the AIDS victims she cared for in life and death. After families refused to claim the bodies, she often paid for cremations in addition to burying them with her own two hands with a pair of post hole diggers. Burks said:
I’d bury them and we’d have a do-it-yourself funeral. I couldn’t get a priest or a preacher. No one would even say anything over their graves… No one wanted him,” she said, “and I told him in those long 13 hours that I would take him to my beautiful little cemetery, where my daddy and grandparents were buried, and they would watch out over him.2
Burks would often do much more than lay their bodies to rest because she was not waiting by the bedside for them to die. So unlike Jimmy’s nurses at University Hospital, Burks took active care of her patients, seeking to provide comfort and care, extending their life even! She picked up their medications from the pharmacies who would ask her to keep the pen she used to sign the check for fear of contamination. She would talk patients through their despair even after their families had completely abandoned them. Most of all, she rarely used latex gloves. Her human touch reminded them that they were still human and very much alive. After many years of this level of care the nation took notice. Her “patients lived two years longer than the national average” and she began receiving patients from across the country: “They sent them to me so they could see what I was doing that helped them live. I think it was because I loved them. They were like my children, even though I was burying people my age”.3
Another patient of Burks, Roger, was not found behind a red door. After Roger was diagnosed, he decided to fly back home and be with his family towards the end. Roger’s family members, who were actively taking care of him and had agreed to do so, had second thoughts because Roger suffered from a brain tumor comorbid with his AIDS diagnosis and was paralyzed from the neck down. Roger’s aunt reached out seeking help from Burks after seeing her discuss the disease on television. Burks was asked and of course agreed to attend Roger, who then stood at 6’5’’ but weighed only 75 pounds. She arranged for an entire medical room outfitted with all equipment and materials to be provided for the family. She even met them at the airport to transport Roger to their home.
Whereas Jimmy’s mother abandoned him to the hospital, Roger’s highly conservative and religious fanatic of a family stayed to bleach his soul – literally. In fact, the family called a funeral home to discuss their options and were told that before Roger would be taken in his body would have to be soaked in bleach postmortem! Burks undoubtedly set the funeral home workers straight though. In my personal interview with her, she told me: “I went to the funeral home and told the funeral director that if I ever heard of him emotionally abusing another family, I could guarantee all of the press right outside their front door, a public relations nightmare”.
Roger’s family’s quest to bleach his soul did not stop at post-mortem decontamination, they were determined to baptize him while still alive. When Burks arrived at Roger’s family home, she was greeted with Roger’s father who was absentmindedly snapping a measuring tape which he’d just used to find dimensions on the hot tub out back. He’d been searching for a way to baptize his son and cleanse his body of the sin of homosexuality and decided that the hot tub would do just fine. Roger’s father seemed interested in how many days his son had left to live not (seemingly) out of sorrow, but rather because the hot water heater had gone out in the tub and couldn’t be fixed until the following Monday.
Roger’s father apparently believed that he was fighting for his son’s soul; and if the hot tub could not be fixed in time to baptize Roger, then his son would, presumably, be condemned to hell. Burks supports this line of reasoning because she discloses that in conversations with Roger’s sister, his sister proclaimed that Roger brought this disease on himself as a result of being such a bad sinner. Furthermore, this derision was amplified by the fact that, as Burk hints in our interview, the family was a major donor to the town’s church but unless Roger was so-called cleansed of his sins, he would not be given a proper burial. This refusal of a “Good Death” was not uncommon for queer or racialized bodies. They were often denied this service and instead would be buried in unmarked graves or their bodies given over to unrelated people to dispose of, as was the case for Burk and many of the bodies for which she cared. And to add insult to horrific injury, that hot tub was likely going to be the place where Roger’s body would be submerged in bleach as per the funeral home’s requirement.
Burks worked through the palpable hatred and grief stemming from Roger’s sister and gave the family tips on how to take care of Roger, mainly how to bathe and care for his body – one they feared so deeply. Roger’s father and younger brother seemed to hear her (at least at first) through the finger-wagging of his sister. It was to no avail, though, because after a few moments of contemplative silence Roger’s father commanded his grandchildren to dam up the creek beside their house, just three short days before Roger died. They were going to cleanse Roger, and their family by proxy, of his so-called sins. Burks told me that “I tried as hard as I could to save Roger from that icy baptism in a dammed-up creek on that cold October night”.
This kind of post-mortem contamination fear harkens back to antiquated Jim Crow laws on segregated cemeteries, especially in the Southern United States. It was yet another way to other a group of people, this time after death. These are deeply Southern ties that cannot be extracted from racialized discourses surviving and unfortunately thriving at the time. The HIV/AIDS body was so often considered “deracialized” (because the disease was thought to pertain only to sexuality or lifestyle- intravenous drug users) yet was seemingly burned in metaphorical effigy to incorporate the hatred against people of color, especially Southern people of color.
The end to Roger’s story, much like that of many others, has been lost to time or exorcised from familial memory. Ruth was asked to leave, and his family was left to do whatever they wanted with his corpse. There was no patch on the AIDS Quilt for Roger. Burks’ stories of him are the only thing left of his specific material life.
This issue of corpse safety, permeated stories like these and so many others. For all of her patients, Burks focused her attention on providing physical comfort as well as emotional support. She nurtured them as their stand-in mother and buried them in her family cemetery. Her first patient, Jimmy, was even buried on top of her own father’s grave in order to keep him safe. She never bowed down to the prejudiced funeral industry and she certainly never turned away anyone who needed her. When she couldn’t care for them after death, she did her best to educate their families. While we don’t know the end-result of Roger’s story, his living body was dipped in an icy creek just to “cleanse” him of the sin of homosexuality. Likewise, if the funeral home had their way his corpse would have been bathed in bleach, a social baptism of sorts to “cleanse” away the misplaced and ill-begotten stigma of HIV/AIDS.
The discrimination that Ruth Coker Burks fought against was felt far and wide. Most specifically, though, it was prevalent in the Funeral Industry. The HIV/AIDS corpse brought about, until then, an unheard-of shift in the industry, one fraught with homophobia and discrimination. The hospitals would not care for queer corpses. The funeral homes would desecrate the body with bleach or charge exorbitant fees if they did not just outright turn them away. Cemeteries denied them a proper and good burial. Funeral homes were frequently accused of bias. They would charge an extra $500 fee to handle AIDS patients in some Connecticut funeral homes, for example, while some just simply and harshly turned them away altogether This happened nationwide. Others advised families not to show the body of an AIDS victim for the misplaced fear that the body could contaminate mourners. Some refused to embalm the bodies and would only take the body if the family agreed to direct cremation without a viewing.
Funeral directors and the general public regarded these bodies as problems of public safety and understood the disease so little that even those living with HIV/AIDS suffered at the hands of this ignorance. The massive-scale rejection of HIV/AIDS victims both pre- and post-mortem because of a culture of fear, ignorance, and hatred, opened up rhetorically to allow the queer corpse to take up space. In many places these bodies also worked within a dual tension of simultaneously being stripped of racialized discourses while being subject to them. For example, while the disease was rarely thought of in terms of race (because it was the “gay disease” for so long) it also became a punching bag for racists and xenophobes to hone their discriminations against marginalized communities. John Troyer’s “Technologies of the HIV/AIDS Corpse” summarizes the situation: “In short, the HIV/AIDs corpse became the nexus of a socially deviant disease, and it marked the sudden impossibility of a dead person’s postmortem rehabilitation through proper embalming by the American funeral industry”. Troyer’s work makes for an image of HIV/AIDs corpses as active actors in the funeral industry.
After talking with Burks and learning about Roger, I was left to contemplate the intersections of not only religion and queer death but race, class and how whiteness pervades queer death and dying. Just how were people of color who suffered from this disease treated during this time? This is largely because of a lack of reporting on caretakers of color (who did similar work to Burks) and African Americans living and dying of HIV/AIDS in the 1908s and 1990s. Arkansas, at the time and still today, was/is home to the national headquarters of the Ku Klux Klan, a mere 3 hours from where Burks was doing her work.
A 2018 NYTimes article reminds that “HIV/AIDS is a critical part of any discussion about black survival. If black lives really matter, the lives of black people living with HIV/AIDS ― and those at risk for HIV infection ― must matter, as well.” The question becomes: How do we continue this work while also delving deeper into our own histories to uncover these critical discussions and make them matter as well?
“AIDS, Black Feminism, and the Institutionalization of Queer Politics” by Jih-Fei Cheng can provide a model on which to begin to center people of color and specifically queer people of color so that their story is not swallowed up by the grand heteronormative narrative of white death history. Burks bravery and service to her community who desperately needed her must be commended, and while there is no doubt that Burks was a radical for the help she provided, how can we as a community, myself very much included, do better at emphasizing diverse voices?
While men and women all over the world suffered greatly from the disease, it seemed that white queer bodies were the face, and in 1980s-90s Arkansas, that was the population that that Burks helped. These white queer men were often feminized because of their gaunt bodies and infantilized because of their physical limitations in caring for themselves. At the same time, they were made out to be monsters because of the fear surrounding the disease and that was without a racial prejudice that pervaded the lives of so many at the time. The hateful discourse surrounding these bodies was as multifaceted as the people suffering from the disease. Much like the Gay and Lesbian Movements of 1970s America, these bodies demanded a presence in life as much as they did so in death.
I invite you to comment below with resources and narratives like Ruth’s or her patient’s that center people of color.
Together, let’s make this a repository for anyone wanting to do this work!
1. David Koon “Ruth Coker Burks, the cemetery angel” Arkansas Times. January 8, 2015. https://arktimes.com/news/cover-stories/2015/01/08/ruth-coker-burks-the-cemetery-angel.